Music in Our Family on Wednesday, April 12, 2017

Tonight, I was reminded about a blog post I’ve been meaning to write, as I heard the conversation coming from Oscar’s room at bedtime out to the kitchen where I was repairing one of the harness straps on Oscar’s power chair (it took geometry and tweezers to do it, I was pretty proud of myself for accomplishing it in the space of about ten minutes). I’ve been meaning to write about music in our family. The conversation was Oscar telling David with surprise that most of his friends don’t like rap, and the few that do like artists Oscar has never heard of. He went on to say, with a real tone of incredulousness and disappointment in his voice, that none of his friends had ever heard of Run-D.M.C. I could feel David’s pride in his boy from all the way down the hall.

Music has been in David’s blood since he was little. It is the thread that has run through everything about his life since he used to examine his dad’s Bob Dylan and Rolling Stones record covers (yes, I mean vinyl) as the music played when he was younger than Oscar. I could go on and on about this—the many ways music has mattered to David, but I was reminded via an email exchange with my writing group this morning that a blog post can be something dashed off without too much work, too much craft, and in under 750 words. I forget this sometimes. I think that’s why it’s been so long since I have posted.

I will tell you this—in 1994 when David and I first met, one of the first things that happened is that he loaned me his REM CD Automatic for the People. It wasn’t until later that I learned what a big deal this was. David didn’t loan CDs to anyone, and he most certainly did not loan REM CDs to anyone. To this day I still love that record.

I wanted to write in the fall to tell you that we took Oscar to his first concert. We did it our style—meaning we drove out of town to hear a band that meant a great deal to all three of us—all the way to Detroit to hear the Icelandic band Sigur Ros. Oscar came into the world listening to them, and for a solid year when he must have been about 5, he fell asleep listening to them every night.

The concert was in a stunning 1920’s theatre with dragons carved into the walls, enormous deities flanking the sides of the stage and ornate chandeliers in the lobbies and performance hall. The sound was perfect—we had brought protective headphones in case it was too loud for Oscar, but the balance was perfect. There was a stunning light show which varied with every song and moved throughout the evening with a pitch-perfect fluidity. And the music exceeded every expectation we had—and David and I had seen them once before, so our expectations were pretty high. The show ended at 10:45 and we walked the 15 minutes back to our hotel, stopping at the corner store for a snack on the way. We floated home all 300 miles the next day. We couldn’t have provided a better first concert experience for Oscar.


And then it hit us: how will we ever follow this up? His first concert was perfect. It will only be downhill from here.

Less than two months later a series of miracles (including several remarkably generous and kind individuals—one of whom was my mom—and one in particular who pulled some incredible strings) came together, and three tickets to Yo-Yo Ma, playing with our own RPO, materialized. Oscar listens to Bach’s cello suites, as played by Yo-Yo Ma every night as he falls asleep, and asks us in the middle of the night to start the CD over. This has been true for at least 2 years now. When we first heard he was coming to town we tried to get tickets. I even tried a back channel when the traditional route didn’t work. We resigned ourselves to the fact that Yo-Yo Ma would be in town, but that we would not be able to see him.

As it turned out, we had seats in the dead center of the orchestra, just far enough to have a clear picture of the full scope of the stage, but close enough to truly see his expressions as he played. Watching the way he embodied the music, and truly collaborated with all the other musicians on stage was nothing short of a gift. And he played one of the Bach cello suites as an encore! The next gift came when Oscar and I were given tickets to the private reception after the concert and Oscar got to meet Yo-Yo Ma. When Oscar told him that he listened to the cello suites every night, Yo-Yo Ma said, “Those are my favorite.”

I don’t know if most kids would understand the magnitude of getting to meet one of the world’s most renowned musicians, but days leading up to the concert Oscar kept saying, “I can’t believe I get to MEET him. Getting to see him is amazing enough, but I’m going to get to MEET him.” He was on cloud nine, and for quite some time after the show as well. He has a framed photo on his night table of him and Yo-Yo Ma that the RPO took. And I snapped a few with my phone…


Since then Oscar has started listening to Hamilton and has memorized most of it. He says he wishes he could just bump into Lin-Manuel Miranda on the street, start singing Hamilton with him, and then take him to lunch (“He seems like such a nice guy, you know what I mean?” Oscar says regularly). He does love Run-D.M.C., Mos Def, Tribe Called Quest. He’s been a Beatles fan since he was a year old. And his first favorite music was Charles Mingus—at five months if we put on one particular Mingus album Oscar would stop whatever he was doing and stare at the speaker. I’m proud of my boy’s eclectic and thoughtful taste in music. And deeply grateful for David in the way he helps foster that in our family.

What It Must Be Like: Oscar Starts Third Grade on Friday, October 14, 2016

I woke up with a bit of a start at 2:23 Saturday morning, after the first week of school. That was the moment that the new school year hit me like a ton of bricks. That was the moment it dawned on me, really, that this is the first time Oscar has been in a school setting where no one knows him already. In our district the transition from second to third grade means moving to a new school building. Yes, his PT (physical therapist) knows him, and this is huge, because she holds a ton of knowledge about his needs and has the skills to provide training to others. But she is not in the classroom with him—and she is not even in the building every day. My head was spinning about third grade for a good two hours in the very early of Saturday morning.

img_3141I found myself wondering what it must be like to be the family that goes to the evening orientation in the spring, receives teacher placement in mid-August, visits the teacher and drops off supplies in late August, and sends their kid off on the bus on day one. We did do all of these things. But our circumstances require much more of us.

Most kids have a teacher. Oscar has a team (teacher, one-on-one aide, occupational therapist, physical therapist, and often the school psychologist and/or assistant principal joins in). We started preparing for third grade in the winter of second grade. In the spring David and I toured the new school with the assistant principal. Then we had a team meeting, then the CSE (Committee on Special Education) meeting in May (attended by Oscar’s second grade team plus OT for third grade, assistant principals from both outgoing and incoming schools, and the Pupil Services Director for the district). This is the annual meeting where we formally discuss Oscar’s IEP (Individualized Education Plan, which is a legal document stating needed accommodations at school) for the coming year.

Throughout this process we discussed things like accessibility of the new school—including Oscar’s desk and the lunch tables. We discussed gym class adaptations, Oscar’s stander and the two-person lift (Oscar now weighs enough that by OSHA guidelines one person is not allowed to lift him to transfer him), what kind of testing adaptations we want to lay the groundwork for, the growing importance of technology in Oscar’s education (i.e. using an iPad with Dragon voice recognition software or Cowriter word prediction software as his writing load increases). We talked about germ control, adaptations in special area classes, a potential modified homework plan. The bathroom was a major topic of conversation. Where would Oscar use the bathroom? Which bathroom would allow him enough privacy, enough space for his wheelchair, and be close enough to his classroom that he wouldn’t miss a lot of class when he goes? Would it be a faculty bathroom or a student bathroom? Single stall or community-style?

We were confident. Things had gone so well with the primary school. We were simply moving to a new building within the same district. And Oscar was excited. He kept saying, “It’s bittersweet. I’m really going to miss Mrs. Beato (his first and second grade teacher), but I’m really looking forward to French Road (the new school).” The meetings laid the groundwork; the next part would be extensive training for staff before the school year started. Partway through the summer I was informed that Oscar’s new one-on-one aide had been identified and that she would come to a PT session over the summer to meet Oscar and begin some training. I was thrilled to begin this process earlier than the last few weeks before school started. It would give everyone (Oscar, the aide, and me!) some breathing room to get acclimated.

As we approached the last week of PT services for summer, which was in the middle of August, I asked, “Which day will the new one-on-one be coming to PT?” I was then told no one had been hired yet. This left me confused, and concerned. It turns out the person who had been selected as his aide had decided to leave the district, and now the district had to go through its hiring process, listing the job for a set period of time before holding any interviews. David and I went into panic mode. How would this possibly allow enough time to accomplish all that needed to be done before the start of the year? We were careful not to show any worry in front of Oscar and remarkably he was pretty calm about the whole thing.

So what does it mean to be Oscar’s one-on-one aide? What is involved? It means providing enough support so that Oscar can be successful at school, can have the equal access to his education everyone else does. But it also means knowing when to step back enough so that he has the maximum amount of independence. This is a very fine balance. If there is a cutting project at school, does one cut out the pieces of the project for Oscar, saving significant time and energy, or let him have the independence and pride of doing it himself, but having him fall behind and possibly have his hands get fatigued? There is no one black and white answer. This is one small question of many that come up each day.

Working with a one-on-one also requires a good bit of vulnerability and trust from Oscar. He is relying on this person to care physically for his body as he would, if he could. To physically move his body through space. To reposition his legs, or scooch him up or shift him in his chair, to get his jacket and other cold weather gear on and off. To take him to the bathroom—which, as he gets older, becomes a more and more private affair. And then to take care of all of the “stuff” in his day: unpack his backpack, set out his snack, put his binder away, set up his lunch each day, uncap his markers, reach the items in or on his desk and around the classroom that he can’t, be on the ready with hand sanitizer at all times. In fact, watching out for germs is a primary piece of the job, since illness can be more serious and more dangerous to a kid with SMA than to a typical kid.

It has been trustfall after trustfall sending our kid out into the world. When he was two we sent him to a special needs daycare that had years of experience caring for kids with much more complex medical needs than Oscar, and which his trusted PT had recommended to us. It was terrifying to let others besides family care for our child for the first time, but we had confidence they were up for the job, and they were. And Oscar loved it!

A year later when he started preschool—a two-and-a-half hour-a-day program—we had countless planning meetings and training sessions attended by what felt like the entire staff of the preschool. Over a period of time Oscar got to know these people, and they got to know him—all before the formal start of the program. Another major step, but one we all were prepared for.

Two years later, the level of planning to transition him from preschool to kindergarten was comprehensive. We had many meetings and many, many visits to the school. Various staff made home visits and visits to his preschool. Oscar had lots of time to acclimate to the new environment and get to know new staff. He also—and this was huge—had one of the special education teachers from his preschool follow him to kindergarten to be his one-on-one aide. So, he already had an existing relationship with the person who would be there for him each minute of the day. She stayed with him all through kindergarten and for the first half of first grade. Partway through first grade she accepted a teaching position within the building and there was actually a period of about a month in which Oscar had two subs trading off days to serve as his one-on-one, before the new person was hired. But even then his teacher, the school nurses, OT and PT and countless other staff already knew him well, and knew his needs well. When the new person was hired she had the A-team for training—all of these people that knew Oscar so well already.

Training. What happened this year, with the hiring of a new one-on-one aide at the last minute, at a new building where no one was yet familiar with Oscar, was that we had three days before the start of school to complete all of the training needed for day one. Oscar and I spent his last three days of summer vacation at school. He and I were both disappointed about this. I took the whole last week off work so we could spend time together. I also knew, long before we knew anything about a missing one-on-one aide, that we would most likely need to spend some time at the school that last week. I just had not anticipated how much.

Oscar loves school and was very excited to meet his new teacher, find out who was in his class and see some friends, so the first day was fun for Oscar. In all we were there for about four hours between the meet-the-teacher hour for everyone, a break in between in which I took Oscar to the bathroom and we learned that the bathroom that had been suggested for his use wasn’t actually going to work (the “accessible” stall was not actually large enough for a power wheelchair)—very important discovery!, a team meeting, and the beginning of training after the meeting. Since Oscar’s new one-on-one was a new-hire to the district she had some obligations to fulfill to complete her hiring process—which were inadvertently scheduled for exactly the same time as the meeting and training sessions. So, we literally met her for 30 seconds that first day. Not cool. Nonetheless we were able to go over some very important information with the teacher, OT and PT, school nurses, school psychologist, and assistant principal. I had quickly typed up a two-page handout of vital information to pass out. And then Oscar’s wonderful PT and Oscar and I were able to demonstrate use of the stander to these members of the team, and to familiarize them with the different functions on Oscar’s chair.

That night is when Oscar got nervous. He had made a plan: he would meet all these new people the first day and get to know them a little, then he would teach his aide and the nurses how to take him to the bathroom the next day, only he hadn’t gotten a chance to get to know his aide that day. I let him know we would all work with him, follow his lead, practice the bathroom without actually undressing at first.

So, the second day we met the nurses and the new aide and the assistant principal in the bathroom (we had finally found the best one to use!) to walk them through all the steps involved in taking Oscar to the bathroom (to honor his privacy I will not share those steps here!). Oscar’s PT then taught everyone how to do a two-person lift, should the need ever arise, and we began training for the one-on-one aide on the stander (this is an involved process that requires a lot of repetition to learn). After about two hours of intensive training that day it was time to move on. Oscar and I had a picnic lunch in the car and then went to buy the few remaining items on his school supply list. Once that was done we had a little spare time before he had to be at aqua PT so I took him out for ice cream. He was exhausted. He could hardly lift the spoon to his mouth and was starting to melt down. He actually asked if we could skip swimming. Our little fish, who would spend 4 hours at a time in the water if he could, who takes such pride in the amazing things he can do in the water, who benefits so deeply from his time in the pool, was done for the day. I canceled an hour before the appointment and we went home and snuggled on the couch and watched episodes of Odd Squad.


The next day was Friday and our last chance to get everyone, especially the aide, up to speed. We spent another couple hours practicing the bathroom for real, practicing going in the stander, and showing his aide how to lift his joystick so he can pull into his desk all the way, how his special set of markers works, talking through sanitizing practices throughout the day, and other little details.

We did it! We got through enough for Oscar to be able to start school the following week. It was intense, exhausting, rushed. But as has been our experience so far in our district, everyone was engaged, thoughtful, dedicated, caring.

There are many important conversations we didn’t have time for, like talking about what SMA is, and what it means for Oscar. Or the sometimes fine line between providing Oscar everything he needs and giving him unnecessary special treatment. Or what kinds of language we have found useful around kids and their questions about Oscar and his chair and other equipment and his abilities.

Oscar is loving third grade. He adores his teacher, who has a similar sense of humor and a fun and engaging tendency toward dramatics the same way Oscar does. They seem to be a great fit for each other. The team as a whole, it seems, is going to be great. There have been some bumps along the road, some of which might have been avoided had we had a slow and steady preparation over the summer, versus a crash course. But Oscar is holding his own. He is speaking out and speaking up, teaching people what they need to know about him, and about taking care of him. I was impressed to hear him report on the first day of school that he had reminded his aide about washing down his lunch table with a Clorox wipe before unpacking his food—I didn’t realize he took the germ control issue as seriously as David and I do! Sometimes I am sure his speaking up is coming out with a bit of a demanding tone. At first I worried about this, and questioned him about how polite he was being. Then I realized, and remembered, he is just barely eight. The fact that he can speak up for himself is tremendous. I certainly didn’t know how to do that at his age.  I have always been introverted and those who don’t know me well might even call me shy—or certainly they would have back then. I am so grateful Oscar did not take after me in that way. He will learn the value of being polite all in good time. For now I will rejoice that he knows how to say what he needs, and how he feels. That is a quality that will serve anyone well, but a quality that will serve Oscar—who will have to rely on others for many of his daily needs—especially well.

Since the start of school there have been many emails back and forth, a couple meetings, and many conversations at home. The bonus of our special circumstances is the chance to get to know the adults who are working with Oscar every day in a way that other parents don’t get. And these meetings and emails and conversations have given me and David and Oscar all confidence that he has a great team working for him, with him. Nonetheless I find myself wondering what it must be like to simply follow the standard schedule of preparing for a new school year…


The Paralympics! on Monday, September 12, 2016


On Friday nights we tend to have “movie night” which usually means watching a show of one kind or another. On Thursday last week Oscar’s aqua PT happened to mention that the Paralympics had started and so on Friday for movie night we watched the Paralympics! This is something I believe I have never done before. Certainly Oscar has never seen them. He was blown away—as were David and I.

For folks who might not know, the Paralympics is an international sporting event planned in conjunction with the Olympic Games, taking place in the same arenas as the Olympics, with athletes who have disabilities. The training, the commitment, the seriousness of the events is parallel to that of the Olympics.

And we were blown away. To watch the way swimmers with one arm break world records. To watch blind runners with exactly as much power and precision as athletes in the, what should I call them, “regular” Olympics. To watch swimmers zooming out in their wheelchairs to prepare for their race, to watch athletes take the medal podiums (which are fully accessible) in wheelchairs. To simply be able to watch people whose bodies don’t align with society’s expected norm on the screen, any screen, is remarkable.

And these are Olympic athletes. Athletes who are war veterans, athletes who were born blind, athletes who have experienced a trauma that has changed the shape of their body, athletes who were born with part of an arm or a leg, or both missing. Athletes who were born with cerebral palsy, or spina bifida, or something that falls within the realm of muscular dystrophy. Athletes who are like my boy.

As we were watching Oscar kept saying, “This is amazing. Look, she only has one leg. This is amazing. Watch her swim.”

And then he said, “It’s so cool there is an Olympics not just for people who are normal.”

Then there was a pause in which David and I each opened our mouths part way and before either of us had a chance to speak Oscar said, “I mean of course people with disabilities are normal. It’s not like they’re a monster. They’re still a human being. It’s just what some people think of them as not being normal even though they are.”

What a moment of pride. David and I locked eyes over Oscar’s head with the biggest smiles. How full our hearts.

In the last two days we have watched swimming (Oscar’s favorite), a little bit of wheelchair basketball, track and field including high jump, javelin, shot put (for which a man in a power wheelchair took the gold), 100m dash.

Here’s the catch of course: this is not aired on regular TV. I have never had cable, but if you do you can watch on NBCSN. The catch there is the hours the games are aired. Yesterday, for example, events were only aired from 1:30 a.m. to 5:00 a.m. Yes, the hours when nearly everyone in the country is sleeping. However, for the next four nights, there will actually be primetime viewing from 7-9 pm! And you can stream the games on

Also, great news (and how we were able to watch this weekend) is that there is livestream available for many events and for many hours in the day.

Here is the link:

The catch with this much more comprehensive live stream is that sometimes the events are aired with no sound coming from the arena. How bizarre to watch basketball without the sound of the ball hitting the floor or the backboard, the crowd cheering, the scuff of wheels on the wood floor.

And sometimes there is no commentary. So you can see an athlete strapped into a special chair, throwing their discus or shot put, you can watch as the athlete runs with the javelin and it lands and you can watch the landing point be marked, but no one is giving the usual Olympic commentary of who this athlete is, what their personal record is, who are their prime competitors, whether s/he is a medal contender or not. And other times it is like watching the Olympics—all the sounds, all the commentary, the stories of what accolades the athlete already has under his or her belt, what personal challenges they have overcome, who from their family is in the stands—the good, human interest story of any Olympics.

Regardless, it is worth watching. Please take ten minutes, or a half hour, or several hours this week. Sit down with your kids and watch with reverence these amazing athletes who are getting very little press, simply because they are disabled. Watching this international sporting event is a way to break down barriers, to normalize physical differences, to teach yourself and your family that yes, absolutely, people in wheelchairs, people with missing limbs, people who have curled-in hands, or a limp, or who are blind are normal people. Are extraordinary people who compete in international sporting events. Are people just like you and me.

Rhode Island! on Monday, August 29, 2016

We went to the ocean this summer! For a week! For the first time!

We rented a little house (400 square feet!) right on a salt water pond, a half a mile from the ocean, in southern Rhode Island. There was a near-constant ocean breeze blowing off the pond onto the deck (300 square feet! where we spent most of our time when we were at the cottage) and also in through the sliding doors and right through our little cottage. We read books, we played in the waves, we built things out of sand, we had lazy mornings, we found shells, we got eaten alive by mosquitoes, we stared at the sky and the ocean, we got sunburned, we explored a couple little towns, we had absolutely no agenda. It was bliss.

However, our week did not start out blissfully. Oscar woke up on the morning we were leaving with a sore throat and a runny/stuffy nose: a cold. I think we went through an entire box of tissues in the car on the way to Rhode Island. Oscar being sick is the single most stressful thing that happens in our lives, because we just never know how any given illness will manifest in his body or how serious (dangerous) it might get. Oscar and I both cried in the car on the way there. None of us breathed that easy light breath that comes with hitting the road toward vacation. My mind ran rampant with thoughts of where the nearest doctor might be, the nearest hospital, whether or not there are any doctors in Rhode Island that know anything about SMA. How much an out-of-network hospital visit might cost us. Whether or not any doctors there would be willing to listen to our pediatrician’s advice over the phone and not admit Oscar if his oxygen dipped low like it did back in June when he was sick.

We had all been looking forward to this vacation for a good solid year—from the time it was just a passing thought: hungering for the ocean, a week to just be, a real complete deep relaxation. And now that was all in question. It might not happen. My mind ran through all of the things Oscar had missed (or occasions on which he had been sick) in the last 18 months because of being sick: visiting author at school, a close friend’s birthday party, New Year’s Eve celebration with his cousins, Mother’s Day, Father’s Day, the entire last week of second grade (and his school is K-2, so he missed the end of this school altogether) including special theme days, the second grade assembly, the bus parade—and more. Now he might miss vacation, too? ARE YOU KIDDING ME?! Oh—and another thing, when Oscar gets sick, he always gets sick for a full week, so we prepared ourselves for Oscar being sick for the entire vacation.

It turned out to be a minor cold. We skipped the beach the first day (Sunday) and stayed at our cottage and read books and took a dip in the saltwater pond. Oscar had a low grade fever for 3-4 days and a stuffy nose for a bit longer. After Sunday we took him to the beach anyhow and the saltwater seemed to do wonders. My panic eased a good bit by Monday, diminishing each day and was completely gone by Thursday (we are never completely out of the woods with Oscar and illness until he is all the way better—there is always the chance for a relapse/secondary infection). Early morning walks alone to the ocean helped a great deal. David remained pretty calm the whole time.

Despite the fact that I just wrote three paragraphs about Oscar being sick while we were on vacation, it is not what any of us hold in our hearts about that trip. We hold onto the magic of being away. We hold onto the magic of being at the ocean. We hold onto the magic of not having anything on our calendars, our agendas. We also had a “google-free” vacation. No screens other than to check the weather or look up directions to somewhere we wanted to visit. Before we left Oscar even said, “I’m not going to use the iPad or watch while we’re on vacation, we’re going to be at the OCEAN!” It is profound how a week away from screen time can feel like a real detox. It was heavenly.

Oscar has seen the ocean twice before. Once when he was 9 months old (while visiting friends in Connecticut we took a couple days in Rhode Island). And once when he was 4 and we spent a day at the Pacific Ocean while visiting San Diego. So during our vacation we kept thinking, “What took us so long? Why didn’t we do this before?” David and I both have fond memories of ocean time from our childhoods that have helped shape us. Why had we not taken our boy to the ocean, for more than just a little peek, before now?

Well there are a couple answers to that question. For five out of the last seven years we have attended the national SMA conference, which is held in a different location every June. Several of those trips turned into 10-day vacations which included sight-seeing, visiting with friends or family, and the like (great trips, not relaxing at all). This year the conference was at Disneyland, same place it was three years ago—a long way to go and a location close to a lot of friends and favorite old haunts in San Diego. We decided to skip the conference this year so we could afford—from a time and money standpoint—a real ocean vacation.

IMG_4188The second answer is that this was the perfect year to be Oscar’s first year at the ocean. Oscar has grown leaps and bounds in his comfort level, confidence, and bravery in the water this year. Oscar has been doing aqua therapy since just before he turned four. Twice a week he practices swimming laps, sitting balance, trunk extension, stretching, and a whole host of other activities—most of which he has made up himself. He can do things in the water he can’t do out of the water because he has a sense of freedom in the water. And within the last year he has begun swimming under water. When he started, he was scared of even getting a drop of water on his face and now he has worked his way up to a whole variety of underwater activities.

So, the ocean was amazing! Oscar used his floaty neck ring and bobbed up and down on the waves, even the big ones. For the really big ones that were threatening to break right top of him, David would throw him up in the air over the wave and then catch him on the way down. Oscar felt the freedom of floating on his own with the ocean waves. He had a chance to ride some waves in to shore. He was ecstatic.

IMG_2996And on the last day when the waves were too big and breaking too fast for any of us to be particularly comfortable in the water David took Oscar into the shallower water right in the beach wheelchair so he could still ride the waves a little bit, even if he wasn’t submerged.

We fell in love with Rhode Island  and wish we could have stayed two weeks. We plan to go back.


A few more highlights from the week:


Oscar above one of the big waves

Oscar above one of the big waves


The beach wheelchair! Many public beaches have these available to use free of charge.

The beach wheelchair! Many public beaches have these available to use free of charge.


The view from the deck of our cottage

The view from the deck of our cottage


Our super friendly neighbors!

Our super friendly neighbors!


Frozen lemonade!

Frozen lemonade!


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